My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

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Visible vs Invisible Disabilities

It’s absolutely amazing how wonderfully helpful and concerned total strangers have been since I started wearing the neck brace out in public! Not only are they helpful, but they also strike up a conversation with me, usually asking if I was in an automobile accident. We ate lunch out yesterday, and a waiter who wasn’t even taking care of us stopped by to ask what was wrong with my neck! I can’t imagine that people would be so interested if I had an arm in a sling. So I think at least part of their questioning is that people “enjoy” hearing stories about wrecks! LOL!

But I digress. This sudden “visibility” (that I have avoided for so long out of self consciousness) affirms that most people have a kind heart toward those with disabilities, but they are usually too preoccupied with themselves to notice those who are struggling with everyday activities. I must work at being more conscious of others when I am in public.

I think of all the people dealing with the various Movement Disorders who don’t use a cane or walker, but who find even walking around to be difficult. I’m sure most don’t want to be seen as disabled, but I’m sure they would all appreciate the little kindnesses, like holding a door open for them. But without that “hit them over the head with it” obvious indication of limited abilities – people just don’t notice they could use a little extra TLC.

I know that has been true for me for a long time. I’ve been uncomfortable with the idea of being seen as handicapped, although I’ve been grateful to have and use a Handicap Sticker for the car. But I’ve also been saddened that friends didn’t notice that I’m struggling. Then I start fussing at myself that I’m having a pity party and to get over it. I can’t have it both ways, I tell myself. I don’t want to be one of these people who is constantly listing all their current ailments, aches, and pains, so it’s my lack of voicing how I’m doing that prevents people from realizing I’m having troubles.

The neck brace has very quickly changed all that. It’s a shame it took using it to cause people to notice the problems I have had for a long time with simple activities like walking.